Starting Radiation in July 2019
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Barb - thanks for sharing! This is all great stuff!
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Barbjc - thank you, so glad you shared it here!
Kber - THIS! is the answer I would expect from health care provider, instead of " it's not us, we don't radiate your brain" or "it's the weather, I had headache this morning too" (repeat this one three weeks in a row).
And me too, everyone is expecting me to be back to normal next day after my last treatment! Including my colleague nurses
so scary. I totally don't feel like I am done as long as the expander is there, and unfortunately it will now be there for a while.I did physio yesterday, found awesome lymphedema specialist in my area, it hurts today as she promised but oh my it feels soooo good.
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Barbjc - thank you! This may be helpful for me when I finish, as my nipple and surrounding skin are not happy getting directly zapped with the boosts. (Honestly my nipple has retracted from the lumpectomies and that area doesn't look very happy with slathering on all this moisture either... I look forward to ending that routine.) The nurse today said there is nothing to be done now as the area needs to remain exposed for the boosts, but only 2 to go. Last night was the first night discomfort kept me up.
SJWhitten - very nice.
Kber: reasonable Doctor! Amazing that so many of us experienced headaches at some time. This past weekend I was not totally on top of my water intake and I was out in the sun a lot, so for me dehydration makes total sense. I'm fine now - the 3 day headache is past.
Giddyup are you done??? If so congrats, Rudolf!
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Today during my routine weekly follow up with rad onc I was basically told that I should see my family doctor and get migraine treatment as it is not from radiation, and she was surprised that I decided to drink 2L of water daily during my treatment. The thing is - I didn't even ask to help me with treating headaches, I just keep answering their question about my symptoms, and I totally don't feel like saying that I am fine when I am not.
What would you do if you were in my shoes? I have two more weeks to go, and I am at the stage where I don't want to see her again.
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Huh - that's an interesting reaction, Julie. For what it's worth, I've had migraines and I've had hangovers and they don't feel anything alike to me. The headaches I've felt during radiation are much more like hangovers. That said, if you are still having headaches 2 - 3 weeks out from radiation, I'd follow her advice and see another doctor. Or maybe even go to your family doctor now? Maybe he / she will have more helpful advice.
You have 2 more visits with your R.O. You can do anything for 2 weeks! But maybe after this sprint, you can change coaches, so to speak.
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What I learned from my almost 20 years experience of working with people is to listen and to learn from them - and to accept the reality that things might not happen 'by the book', but it doesn't mean that they are wrong or lacking knowledge.
I am not even looking for help, I am sure that all this will be over a couple of weeks after finishing treatment. But I don't feel like saying to them I am fine when I am not. And sometimes all they need to do is to provide some sort if encouragement maybe.
It's very tempting to ask for another doctor, or maybe to look for related research and bring it to the clinic (I couldn't find any when I did I quick search but who knows maybe I should keep digging?). But I have less than two weeks left. So I will just try to let go. I wish doctors were treated in the manner they are treating others when they get sick.0 -
I was lucky enough to know someone who sits on the board of the hospital where I had my surgery. When she asked me how it went, I suggested that she, every board member, and the key administrators should take a tour of the hospital on a gurney - looking up at the ceiling. Let's just say, the different perspective was helpful, and led to many discolored ceiling tiles being replaced!
It's not that she was not smart, or uncaring. She just needed a different perspective (literally) to see something that had to be improved.
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Julie, I agree that if someone could just empathize with you about your symptoms, it would feel more caring to you, even if they have nothing concrete to suggest, a little kindness and sympathy, rather than being defensive about it, would be easier. If you wanted, if you can find some kind of research to back up your suspicion of the headaches being related, I would send it to RO along with a note suggesting that they might be more sympathetic to the next person who reports headaches. (not in an accusatory way, but still getting your point across---but I would wait to send it till you are finished!
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Hi all: JLall you are a sweetie to remember yes I finished being microwaved yesterday. I had five boosts and damn they made my skin sore. I've been told I will still cook for up to two more weeks. My poor rudolph is bright red and my nipple hurts like crazy peeling swollen and really angry. I think it may call a lawyer so it can sue me for abuse. Anyone need me to guide their sleigh tonight lol.
This may be a longer post but I feel awful for the fact that you are not getting your needs met by your RO. My first RO went on paternity leave he was a doll. Second one was useless (one appointment he kept reciting the company line radiation doesn't cause anything except a bit of a burn) talked to my techs and they got me a new RO the next day. She has been amazing is totally brilliant and also has a research grant (she works at my hospital and at PMH). She agreed that my headaches could certainly be do to the rads even after only one treatment, agreed fatigue for some can start on day one. She said about 10% of patients had noticeable side effects from day one. I had redness and swelling after the tattoos she was the only one to figure out I was allergic to the blue dye they use for lymph node stuff and told me don't take it again. They use the same dye in the tattoos. I am allergic to sulpha and she researched to find me an antibiotic cream I could use. Had my last appointment with her and she told me if I had any questions or concerns just call her.
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Sj congrats on being done, nice to have it over with.
Julie I am so sorry that you are not getting what you need from your RO. Honestly you can ask for someone else. I can't remember what hospital you are at but most in the toronto area are working on their patient first satisfaction.
Jlall - you are almost done Yay.
Kber how many do you have left. Your suggestion for the hospital board members was great I hope they do it.
lois - how many do you have left. How is it going so far.
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Giddyup Girl, I just had #1 today. it appears from the calendar/schedule that I finish on 9/26. So I am not sure if I am doing 25 + 5 boosts (which is what the calendar would say), or 28 +5 boosts, which is what I understood. Either way I have a ways to go but at least I am started. So far feel pretty good, I do feel slightly fatigued but may be due to the anticipation of starting, and plus it was the first day of school today (I have two seniors in high school so it is sort of bittersweet).
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Julie - my two cents are... gonwith your gut. My (former) oncologist demanded a marrow biopsy because white counts were elevated, but i was 16 days out from my first surgery and only 6 out from my second surgery. He and his team would not accept my counts could be from my body healing and refused to let me wait and a blood test later. I refused to do the marrow biopsy. My new oncologist tested by blood over a week later and my counts were fine. If I hadn't gone with my sincere gut, I would've had a painful unneeded procedure. Trust your gut and common sense imo.
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Giddyup YAY YOU!!! I hope your skin heals pronto and your nipple calms down, you are only doing what's best in the long term for her!!!
Loiswb it's good to begin. I think the first week was hard for me because of fear/anxiety and the weirdness of it all, but after that it got easier in most ways. Hang in there!
Julie I am sorry your RO could not listen. I decided not to do rads at the first place I went to even though it took a month and a longer drive to get to my new place, for a similar reason. He knew it all but yet did not give credence to my questions. I did not feel good about going there every day for a month.
Is there another RO in the practice who can check in with you for these last 2 weeks? Is there a nurse or anyone there you like who you could speak to?
Kber nice work. I love it. I wrote a letter to the local hospital after my first surgery because it was such a Kafkaesque experience. Luckily the surgeon was good so in the end the results were fine, but it was an unnecessarily shitty ordeal. My second surgery at Memorial Sloan Kettering in NYC felt like a day at the spa comparatively - and the most important difference was the care and compassion with which I was treated at every step.
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Finished 24 / 25 this morning. Hopefully the weekend will give my skin a bit of recovery time, and then one more Monday morning.
I'll have follow up appointments and also reconstructive surgery early next year, but as of Monday, active cancer treatment will be over.
I found the lump in early October, got my biopsy November 3rd and started chemo the first Monday in December. It will be 9 months of active treatment. Add 2 months for diagnosis and planning, and it's been just shy of a year. What a trip we're on!
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kber, you said this: "and it's been just shy of a year. " And my brain read this: "and it's been just a shitty year."
YEAH.
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Mountain Mia, me too!! For a reason
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kber & all - you are amazing.
I finished today - 20/20!
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YAY JLall!! Congrats to you. How will you celebrate?
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Congratulations JLall!!
I started doing saline soaks, was lazy to prepare my own solution, ended up getting a bottle of saline. It makes a huge difference!
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Congratulation JLall - Yay you did it you're finished, you're toasted and roasted but you are done. Party time. I finished wednesday my daughter bought a cake and we took two forks and ate it all. Had a sugar hangover on Thursday but totally worth it. Spoil yourself.
Julie I agree saline soaks are great I am keeping mine up for the next two weeks. How are you holding up.
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Congrats to all who have finished!! I only did #2 rad today but am getting there I guess. I am looking to finish around October 1st and got the results of my biopsy last year on December 3rd so it will be 10 months for me.
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Thanks everyone! Yes Giddyup - roasted and toasted and done!!! (I love your posts so much.)
Yesterday I celebrated by crying in the parking lot of the hospital, laughing all the way home, and then working my butt off all day. (PMS...)
My husband did cook me dinner which is an unusual treat - haha. I am taking a few days off this coming week and going to Maine, and I cannot wait to dip this red hot boobie in the cold, healing ocean.
Enjoy your week-end of rest everyone!
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JLall have a fantastic time in Maine (Please eat fried clams for me - they have the best ones). Ocean perfect - saline soaks for red hot boobies is perfect (and you don't even have to add the salt yourself). And you are just a little mean cause I work on weekends(lol). Remember cover up that red hot boobie of yours or go skinny dipping at night. Enjoy.
Lois - don't diminish the two done that is awesome. I found the first week stressful then it was easy, then I was stressed so I took a day off, then I was done. Spoil yourself and lavish lots of attention on your hot boob. I think you should name it so it feels special. Don't forget to say hi once in a while to your other boobie so it does not feel unloved. Have a fabulous weekend.
Kber have a great weekend and celebrate on Monday - cause you are one and done.
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Giddyup aw! I am working all weekend too to earn that trip to Maine! I promise no seal nor osprey will spy my exposed boobie. I'll wear my greasy goodwill radiation teeshirt wardrobe into the ocean...
Edj3 - you're sweet. Cathartic tears I think
Lois: start counting 'em down...
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JLall Good Job it would spoil your holiday if the underwater police (singing under the sea) arrested you for indecent exposure. And now I feel bad (only a little) that you have to work too this weekend. But only a little since I go from 5:00pm tonight till 11:00am next Saturday. Again have a totally blast in Maine and take a few swims for me.
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kber:
"I once saw a sign on Facebook or Reddit that was supposedly in a doctor's office that read "Please don't mistake your google search for my actual medical degree!" Someone had posted under it "Please don't mistake your class 15 years ago on my condition with my 15 years of actually living with it."
HAHAHAHAHAHA!!!! (That is all.)
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Giddyup, about naming hot boob but not ignoring the other one, sounds like avoiding sibling rivalry. And I would not be a bit surprised.
JLall, congrats! And please eat lobsters too, besides fried clams.
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All done. Finished 25 / 25 this morning. I brought in bagels and stuff. The staff all signed a Certificate of Completion. I got hugs from the folks who treated me today.
I have one badish "burn" on my left clavicle. It's raw, but not open or weepy. The nurse looked at it and advised me to keep up with the Aquaphor and confirmed I could use the prescription strength Lidocaine on it I had left over from chemo (I applied it to my port before treatment). She said it would probably get worse over the next week and then start to heal, consistent with everything I've read here and elsewhere.
Emotionally, I admit I'm pretty blah. I have a busy day at work and my boss is already pinging me. I think this is a good thing, as I'm not quite ready to process it all yet. Like Scarlett O'Hara, I'll think about it tomorrow!
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Congrats on the finish, kber. And yes, on processing, it will probably take a while and there is no need to start this minute. Hugs...
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